Help us strengthen the rare disease community's voice on Capitol Hill! Please take 3 minutes to ask your Member of Congress to join the Rare Disease Caucus at http://bit.ly/RareAlert.
Cushie bloggers - who would like to share your post on April 8 (Cushing's Awareness Day) with our friends at Adrenal Insufficiency United, on their blog?
Also, they are interested in sharing others of our posts from April. Please let me know if I have your permission to share your blog post(s) with them. I won't without your permission.
Do you blog? Want to get started?
Since April 8 is Cushing's Awareness Day, several people got their heads together to create the Second Annual Cushing's Awareness Blogging Challenge.
All you have to do is blog about something Cushing's related for the 30 days of April.
Robin designed this year's version of our "official logo" to put on your blogs.
Global Genes | RARE Project would like your voice to be heard!
Share your home videos!
We are currently looking for your home videos that illustrate what life is like for rare disease patients and caregivers on this complex and often emotional journey. This could be an assortment of moments that you’ve captured on your phone, a camera, or a digital recording device. We want the key moments, the most beautiful, personal moments that represent not only the diseases, but you and your child(ren) as well.
A few examples of what we are looking for in these clips:
Be creative, think outside the box. Look for clips that are shot well, with nice light. Give us variety! Old footage, new footage, maybe even something your child has shot. We want personal, private moments. That is what will send the strongest message.
What are we going to do with this?
We are working with an award-winning filmmaking team to select submissions that will be compiled together to create a visual storyline of the years of your ongoing journey. This is your chance to share the moments that you see and experience with a global audience.
This is your moment to be heard.
More information at http://globalgenes.org/rare-video-submission-form/
Cushing’s syndrome (pronounced KOOSH-ingz SIN-drohm) is a condition that occurs when a person’s body tissues are exposed over time to too much of the hormone cortisol (pronouncedKAWR-tuh-sawl). The syndrome can be caused by taking certain medicines or, less commonly, it can be caused by noncancerous or cancerous tumors. Cushing’s syndrome includes a range of symptoms, but they can be treated and, in most cases, the syndrome can be cured. The NICHD is one of the many federal agencies that support and conduct research on the causes of Cushing’s syndrome, detection of its symptoms as soon as possible, and development of improved treatments.
For more information about this topic, select the Condition Information, Research Information, Clinical Trials, or Resources and Publications link in the menu on the left.
The most common cause of Cushing’s syndrome is taking medication that contains the hormone cortisol. This leaves the body with more cortisol than it would normally contain from the natural production of cortisol.1 Less commonly, a cancerous or noncancerous tumor in the body can cause too much cortisol production.2
Among 1 million people, two or three will develop endogenous (non-medicine-related) Cushing’s syndrome each year in the United States.3 Women are three times more likely than men to have the condition.4
The symptoms of Cushing’s syndrome vary, especially in mild cases, but patients may have some or most of the following1:
Cushing’s syndrome can be treated by the following:
Friday, April 19, 2013 - Registration and exhibits-4 PM to 9 PM
Saturday, April 20, 2013 - Educational segments
Sunday, April 21, 2013 – Educational Segments
Monday, April 22, 2013 – Departure or visiting sites of Las Vegas
Registration: $155 for members $190 for non-members (includes 1 yr membership)
Registration fee includes: Thursday exhibits and refreshments, Friday continental breakfast, and lunch and Saturday continental breakfast and lunch. An optional dinner will be held on Friday night for $25.00 per person.
For additional attendees in your family there will be no registration fee but a $75 charge for inclusion of the segments and meals. (optional dinner on Friday night not included in the $75 fee)
Tuscany Suites & Casino (Just off the Las Vegas Strip)
255 East Flamingo Rd
Las Vegas, NV
Guest room costs:
Friday and Saturday $105 per guestroom, single or double occupancy ($117.60 w/tax)
Sunday thru Thursday $65 per guestroom, single or double occupancy ($72.80 w/tax)
Reservations made after March 20, 2013 at noon will be charged the prevailing room rate if accommodations are available. To book your room you must call Tuscany Room Reservations, 877-887-2261 and ask for MAGIC Foundation group rates. You will be required to provide a major credit card for the first night’s room and tax deposit, which will be charged in order to guarantee accommodations.
Koki Mise, Yoshifumi Ubara, Keiichi Sumida, Rikako Hiramatsu, Eiko Hasegawa, Masayuki Yamanouchi, Noriko Hayami, Tatsuya Suwabe, Junichi Hoshino, Naoki Sawa, Masaji Hashimoto, Takeshi Fujii, Hironobu Sasano and Kenmei Takaichi
- Author Affiliations
Nephrology Center (K.M., Y.U., K.S., R.H., E.H., M.Y., N.H., T.S., J.H., N.S., K.T.), Surgical Gastroenterology (M.H.), Pathology (T.F.), and Okinaka Memorial Institute for Medical Research (Y.U., K.T.), Toranomon Hospital, 1058470 Tokyo, Japan; and Department of Pathology (H.S.), Tohoku University Graduate School of Medicine, 9800872 Sendai, Japan
Address all correspondence and requests for reprints to: Koki Mise, M.D., Nephrology Center, Toranomon Hospital Kajigaya, 1-3-1, Kajigaya, Takatu-ku, Kawasaki-shi, Kanagawa-ken, 213-0015, Japan. E-mail: firstname.lastname@example.org.
Nilufer Alcalar, Sedat Ozkan, Pinar Kadioglu, Ozlem Celik, Penbe Cagatay, Baris Kucukyuruk and Nurperi Gazioglu
The aim of this study was to evaluate patients with Cushing’s disease (CD) who had undergone transsphenoidal surgery in terms of depression, quality of life (QoL), and perception of body image in comparison to healthy controls.
Forty patients with CD and 40 healthy controls matched for demographic characteristics were included in the study. The subjects were evaluated with the Beck depression inventory (BDI), the health survey-short form (SF-36) and the multidimensional body-self relations questionnaire (MBSRQ). Subgroups of the patients with CD were formed on the basis of remission status and BDI scores. In this study, QoL in the general health category and body image were lower in the patients with CD than in the healthy subjects. However, no differences in depression scores were found between the two groups.
When the CD group was evaluated according to remission rate, the mean BDI score was significantly higher in the CD patients without remission than in both the CD patients with remission and the healthy subjects (p = 0.04). However, the physical functioning, bodily pain and general health scores of the CD patients without remission on the SF-36 questionnaire were lower than in the CD patients in remission and the healthy subjects (p = 0.002, p = 0.04, p = 0.002, respectively). Fitness evaluation, health evaluation and body areas satisfaction scores of the MBSRQ were significantly different in the three groups (p = 0.003, p = 0.009 and p = 0.001, respectively). In this study, patients with CD were found to have lower QoL, lower body image perception and higher levels of depression compared to healthy controls, particularly if the disease is persistant despite surgery.